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FAQs (data security, timeline, etc.) for the NewSTEPs Data Repository can be found linked here.

Why enter my data into the NewSTEPs data repository?

The NewSTEPS data repository is a centralized and secure database that can be accessed by authorized users from anywhere and allow each NBS program to explore DATA to meet local program needs.

NBS programs that enter data into the NewSTEPs repository will have access to their own data plus aggregate data from other participating NBS programs.

NBS programs will be able to generate standardized reports based on their data to develop quality improvement initiatives.

Standardized Case Definitions and Quality Indicators are integrated into the NewSTEPs data repository.

What is NewSTEPs doing to protect the data?

NewSTEPs has sought guidance on the data repository and all data sharing activities from both the Colorado Institutional Review Board and the Department of Health and Human Services (HHS) Office of Human Research Protection (OHRP). Both entities have deemed this project to be Non-Human Subject Research. Details about the data security and timeline can be found linked here. The Colorado Multiple Institutional Review Board Chair has written a letter detailing the process undertaken by NewSTEPs and summarizing the plan. For additional information, please watch our video about the benefits to signing the NewSTEPs MOU or contact us.

Who do I contact if I have questions?

To facilitate the efforts described, our multi-disciplinary staff includes newborn screening staff from APHL and faculty from the Colorado School of Public Health (CSPH). Careema Yusuf is the staff lead for all data related activities.

How do I request data?

NewSTEPs has established formal processes to request data from the NewSTEPs data repository. While NewSTEPs encourages data requests from the data repository for research and quality improvement purposes, NewSTEPs will in no event share state-level quality indicator data or case data unless explicit permission has been granted by the NBS program. Any data sharing request for information that is not public/ available will be channeled through APHL’s governance structure. Each data sharing request will be directed to the Data Review Workgroup, which is charged with providing expertise to make recommendations to NewSTEPs staff and the NewSTEPs Steering Committee on any requests made for data collected within the NewSTEPs Data Repository.

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This resource was developed by funding from the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U22MC24078 for $850,000.